Yvonne Richardson's story about her son Chris...

Chris was born on the 1 November 1984 he was my second and last child. Chris was sent home from the hospital a healthy baby - so we were told . He never woke for his feeds and slept all the time, we tried our best to force the milk into him but he just slept through are sucked a couple of times and fell straight back to sleep bless him.
On the 10th day my midwife said I will get your GP to come and check him over, sure its nothing to worry about . At 5 pm that night our GP came out and then phoned the freeman hospital , that was when our lives would change forever . Chris was giving an echo , we were then took into a room and the cardio docs broke the worst news ever that our baby was dying.
They put him on a drug to keep his pda open the only thing that was keeping him alive, in a normal baby it usually closes of about 10 days old here we were with our 10 day old baby ..That night he had 2 cardiac arrests a side affect of the drug , but thanks to the skills of the staff at the freeman that night they saved my baby . Chris went to theatre 2 days later for an op to put a shunt in to keep him alive we were told that this was the only op that would be available because there was nothing else they could do for him . We were told that they could not tell us how long he would live because not that many kids do well living with a single pump . I could tell you a thousand stories of how hard we struggled with tube feeding and fast heart rates many other ops because of various other pr obs over the years , but at the end of the day chris defied all the odds and lived . Chris spent all of his life in a wheelchair from coming out of a child's buggy he never had the strength to walk . Chris began to really go down hill in his teens always so tired due to the pressures in his lungs caused by the huge shunt put in his heart at 10 days old ,it saved his life but at the same time caused the demise of his lungs . The worst times were his collapses when we thought we had lost him his heart just did not know how to beat properly any more it would go from about 80 beats per min to 280 beat in a second just swiping him of his feet as he tried to get out of bed for help .
The worst time we just heard a huge bang at 5 in the morning ran in his room and he was on the floor eyes wide open white as a sheet this must be it i thought running for the oxygen and slapping it on his face hands shaking and thinking that i was going to collapse myself , but after a few Min's he came around the bang had not only put his heart back into a normal rhythm but had also severely winded him hence he could not breath or move . from that day we started the process of transplant having put of so long now was time .. Chris, his dad and myself spent the five days together at the freeman for his assessment to see if he would make it on to the list . On the last day all the transplant team called us into a room to give chris and us their decision . they told us as from that min chris was on the list for a heart and double lung transplant , we did not know weather to laugh or cry such a surreal day . 15 th April 2007 was a new saga in Chris's life now we were waiting , waiting for someone else to die- omg how were we going to get through this without falling apart .................. On The 26 July 2007 i received a call from the transplant coordinator they may have a suitable donor for chris could we be there by 10pm it was now 8.30 pm . Chris, his brother and dad were sitting watching Newcastle play on sky TV , they had heard my conversation on the phone , chris just sat there and looked lost we never thought this might be a false call don't ask us how we just knew that tonight this was going to happen .The call came on the 26th , but it went until the early hours before we were told it was a go, 27 -7-07 we took our boy to theatre only one person was allowed to go in the pre med room with chris we asked who he wanted he looked into my eyes and said you mam .
Chris said his goodbyes to his dad and brother and sister-in-law as they pushed him through on his bed he put his thumbs up to them and said bring this on it has to be done . I kissed and hugged him and did not want to ever let go we had fought for 22 years to keep him and i felt i might never see him again . I walked back with Kristy the transplant co , who i can only thank for putting up with a mother who was totally not there i can not remember rejoining my family the next 9 hours just passed in a haze until my mobile went saying chris was coming out of theatre he was alive that's all i could think . I wont go on about his recovery to much you can imagine what he looked like he had just had his heart and lungs took out and replaced . Will just say he did amazing he came of life support after just 12 hours fighting the ventilator . the next day we walked in and looked at chris he was amazing he was pink, he was so drugged up cant remember the 5 days in ICU but he looked great .he spent the next 3 weeks on the transplant ward had a few hiccups and a bout of rejection which was handled very swiftly . He came home at the start of week 4 wow . Chris continues to do well has had a few hiccups nothing major one more rejection episode which was dealt with again . 3 and a half years post transplant and we all are so so grateful to Chris's donor and family . CHRIS is walking and breathing and is living his life , we were told he might not live past one then his teens but here we are today 26 years on . i wanted to share Chris story to those of you who are on this journey now, there can be a future even if you are given the worst prognosis like us .xxxxx

Thank you so much Yvonne...Chris is an inspiration to us all <3

Michelle Leigh Padilla-Hanna's story...

Written in the words of Michelle Leigh Padilla-Hanna...

Hi my name is Michelle Leigh Padilla-Hanna.
I was born in Tuscan Arizona, after only living there for two months my mom and dad decided to come California were they have, at the time, best doctors to deal with a little baby who had lack of oxygen that went to the brain and that point I turned blue. I almost died a couple times. I had my first heart surgery when I was 2 at St. Vicente hospital, my second one when I was 5 years also at St. Vicente hospital,my third heart surgery when I was 13 at St. Vicente hospital.
I had my mouth and ear surgery at Torrance Memorial hospital.

When I was growing up I was in special program through out elementary, Jr High School, High School. I had my seizure when I was 18 i dont remember much because I was out for 2 weeks. Thank god my mom was there. I just recently graduated from college. The school that I went to is Harbor College it is a community college. I have had jobs but was not able to keep any of them because I cant pass a test to keep my job also I was getting sick with colds. I just had sinus surgery a few months ago. I just recently found out that I have Di George Syndrome. I never knew that I had it neither did my mom or dad. I am the only child. The doctors told me that it is a 50-50 percent chance that my kids could have this syndrome, so my husband and I decided not to have any kids. I will always have more surgeries dont know when though.Thanks so much in helping me and getting the word out. I trying to to get my benefits back SSI but they keep turning me down.

Sincerely yours,
Michelle Leigh Padilla-Hanna

Sairah Grace Casto-Hodge's story...

This story is written in the words of someone with CHD...

My name is Sairah Grace Casto-Hodge. I am 18 years old. I was born with a congenital heart defect called Transposition of the greater arteries & pulmonary stenosis.

My mom said that her pregnancy went fine and that the doctors said I was healthy and a good size. Then on October 19, 1992 at 6:57pm I was born and within 2 hours they told my family I was turning blue and I had something wrong with my heart. They transported me to Long Island Jewish Hospital in New York. There is where the Cardiologist decided I needed open heart surgery. Dr. Joseph Amato was my Pediatric Cardiologic surgeon. My family said he was an amazing Doctor and he was very caring and gave my parents lots of information and so when I was 7 days old I had the open heart surgery called the Switch, which took 10 hours in the operating room. I was given a 50/50 chance and I was not promised tomorrow.

My years growing up I have had a few heart caths, balloons and stints. I had my 2nd open heart surgery in April of 2008. So I did not finish my freshman year. One of the common sides affects of having a heart condition and having open heart surgery is Scoliosis of the spine. They say due to the fact of the heart and also ribs being cracked that it pulls you forward. I had to wear a full time back brace. Then I had to have 2 spinal fusion surgeries in 2009 and now I have 2 rods in my spine and 24 screws. I had the first spine surgery with 2 rods 18 screws in Aug. of 2009, but then due to complications I had to have another spine surgery which left me now with 2 rods and 24 screws and only 2 discs left in my back. This caused me to miss the first half of my junior year. I always seem to get sick easily so I miss a lot of school, but I push to stay on top of things. As far as my heart I still have issues, but I do not let it stand in my way. With medication and my desire to be strong and never give up I enjoy life.

My family is a very important part of my life. My parents are always by my side when I go through all my medical issues. I also have a 10 year old sister, Sierra who calls me her hero, because she says I am a fighter and she is proud to be my sister. Even at school my sister did a report on me. I sometimes feel bad that I take my parents away from her when I am in the hospital, but she understands and we have a close bond. I love her to pieces.

I am a senior at Orange Park High School. My future goal is to be a trauma nurse in a pediatric hospital or sports medicine. I love working with children and I want to be able to help them heal and also I will be able to understand what they are going through. It is hard for children with medical conditions, especially for teenagers. I can give them support in different ways.

My family and I are very actively involved with different organizations in my area. I am a part of Mended Little Hearts, Starlight Children’s Foundation, American Heart Assoc., Dreams Come True and Songs of Love. We are active members because I am a teenager that was born with a congenital heart defect and I am also involved by doing community service for them. I am a singer and I sing a lot for the community by singing the National Anthem for different organizations and I also do concerts. I did my very own concert at the local Fair this year. I even got to be one of the opening singing acts for the country singer “Linda Davis”, who happens to be the mother of Hilary Scott from Lady Antebellum. So I opened for Linda Davis and then had lunch with Linda Davis and Hilary Scott. It was amazing.

I also just found out that the American Heart Association made me the face of the First Coast for the “Go Red” the fight against heart disease for 2011. I will have to speak at events, be in a fashion show and go for a photo shoot so I can be on the advertisement for Go Red. I am so honored and excited because I want EVERYONE in the world to under stand how important the fight for heart disease is.

Another way I have tried to help others is for my Sweet 16 and my 18th Birthday they were Birthday Parties that were also a fundraiser for Dreams Come True and instead of people bringing gifts they donated to Dreams Come True in my honor and 2 little girls that were also born with CHD benefited from my parties. It made me feel so good to see the smiles on these little girls when they had their Dreams.

I love to hang out with my family and friends. I enjoy going shopping, watching movies and I love to sing. Did I mention I love to shop???

My advice to all CHD children and their families is to be a kid. Unless the Doctors say you can NOT do something, then do NOT sit back and waste life away. Enjoy it and live it to the fullest. I have done many sports. I have figured skated for 5 years and I am a singer. I have future plans to be in the medical field. This is how my parents raised me. They told me “I was never promised tomorrow, so live and enjoy life today”. I live outside the bubble.

God Bless you all.

Sairah Grace Casto-Hodge

Amanda Bell's story...

This is Amanda's story about her little girl Tanesha Mae...

Well where can I start? As soon as I hit 30, the clock was ticking and I wanted another child; boy or girl, I wasn’t too bothered just like most parents but I thought the baby thing wasn’t to be till I reached 35 and found out I was 7 weeks pregnant. I had the most horrendous morning sickness ever (if you can even call it morning sickness it lasted all day) I also had bleeding at 8 weeks and thought I’d miscarried but no, I knew this baby was strong then; this tiny human hung in there. I went to my 12 week scan and everything was fine, I carried on with everyday life like normal, then came my 20 week scan and my other 2 children came with me and again was told everything looked fine! So I went home and just prepared for my baby girl to arrive - you see, I wanted a girl and everybody in my family said it was a girl and they were right, it was a girl! I was so happy and couldn’t wait; I picked a name straight away and stuck with it. “Her name is Tanesha Mae” I said to all my family. Now my due date came and went with no signs of labour, even had a sweep at 41 weeks and had horrendous pain for the next week and after that my waters finally broke and off I went screaming to hospital. This was the worst labour I had had you see, I also have 2 teenagers and their birth was much easier compared to this. I had forceps because she got stuck and ended up with 32 stitches. Tanesha weighed 9lb 10 oz - ouch!!! Anyway the moment I saw her she was my world and I bonded with her long before I gave birth as I wanted her for so long! I stayed in hospital for 4 days due to amount of blood I had lost and we were both discharged and sent home. She seemed to be an easy baby; sleeping all the time; only waking for 5 minute feeds then going back asleep. This was constant and I began to worry as she also seemed to be breathing too quickly so the next morning I told my midwife about it and she checked her and said it may settle in a day or two so I said ok and carried on as normal. As the days passed all she seemed to do was sleep and feed then after about 2 weeks she started vomiting so again I got the midwife to check her and she decided to weigh her for the next few days to see how she goes on. The beginning of the third week she had lost well over 70g so I was sent to the local hospital to get her checked out. They did all the checks and I was sent home with gaviscon for reflux. I tried this over the weekend then took her back on the Monday because she had lost more weight and her breathing was becoming worse. I waited for hours to see a doctor and when the doctor came out he did all the checks and asked a lot of questions. He then left the room and in came another doctor; at this point I was getting anxious as the same questions were getting asked over and over again. He then turned and said they wanted to get a senior doctor to come see her and talk to me. I waited 5 minutes for the registrar to come, he examined her and turned to me and said has anybody mentioned that she has a heart murmur? I replied with ‘no what does that mean?’ and from this point on, it was the worst time of my life as something inside me was ripped apart. I was taken to the ward while x-rays and ECG’s were carried out on my beautiful baby girl. Blood test after blood tests were done whilst I sat there and cried. After all her tests had done, a nice doctor came to see me and told me the x-rays and ECG weren’t normal and said they wanted to do a lumbar puncture but I told them no so they went to get a different doctor to come and see me. After an hour or so a nice curly haired doctor came to see me and said they don’t need to do a lumbar test as he had looked at then x-rays and was sure it was her heart that was the problem. He was sending me to Leeds heart unit for her to have an echo; I was so scared for my baby. The next morning we packed up early and waited for an ambulance to transfer us to LGI ward 10 heart unit; it arrived 10 minutes later and off we went. It took a good hour to get there and when we arrived I was sent into this room on ward 10 with a big machine that takes an echo of your baby’s heart and vessels. I sat there holding her head still while the scan was done. I couldn’t tell you the fear I felt inside as I watched the doctor scanning over my baby’s chest. After it was done she turned to me and said there is something wrong with your baby’s heart, I will draw it to explain to you and as she started drawing the diagram, I knew it was serious; she turned to me and said your baby has a complete Atrioventricular Septal Defect and without surgery she will die. My world right there and then just fell before me. I picked up my baby and held her so close and cried and at that point I gave my daughter to the nurse that came with me and I ran to the toilet to be sick. When I returned they had put my daughter on the oxygen and put an NG feeding tube in. They said her ‘sats’ were low and she needed help. They told me I might have to stay for 4 days depending on how she did on meds. The next morning the doctors did their rounds and they got to Tanesha’s bed and said ‘late diagnosis of complete AVSD’ and talked through her short history as I eagerly listened and as the days went by her breathing got worse she started vomiting at every feed even though she was tube fed and she was sweating and clammy; it was obvious she needed the operation soon. That’s what the surgeon confirmed and that it was to be done on the following Monday. Monday morning came and it was the worst day of my life; I was taken down to the theatre until she was put to sleep and with tears rolling down my face I gave her a kiss and then I went with my sister into town; looking at my phone every 5 minutes trying to pass time on as they told me it would be an 8 hours operation when in fact it took over 9 hours to get her stable so I could go see her in ICU, I was led into a room to wait for the surgeon to come talk to me. I sat there crying with my sister when in walked the surgeon, he looked at me and said "things went well but it was very difficult; her valve was paper thin and transparent but I succeeded to separate it and I patched the holes but the next 48 hrs are critical". When I saw her it wasn’t what I expected; she was swollen and her chest was left open because her heart was very enlarged. There were so many wires coming from her tiny body and all I felt at that time was guilt; I blamed myself, always asking why me? But nobody knows why - I wanted to be there instead of her. It was an eventful week watching the doctors and nurses giving meds to keep her blood pressure stable and cloral to keep her sedated. After a week they closed her chest and started to wake her up and slowly take her off the ventilator and I cannot tell you how happy I was to hear her cry (well more like a little lamb noise than a cry) but it was brilliant to hear and as the days passed they prepared her to go back to HDU upstairs which was a step closer to home, but when she got to HDU, the morning after she didn’t look right so I got a nurse to get the doctor. They started her on antibiotics for an infection but at this time they didn’t know where it was. They sent off bloods and we had to wait for the results. After a day she was getting no better so the doctor came and said she got a nasty infection of the blood caused by the arterial line in her neck so it was removed and she was put on very strong antibiotics; she also was struggling to eat as her stomach wasn’t digesting her food and it became very distended so I was told that it was suspected nec of the bowel and she had to be nil by mouth for 7 to 10 days and I just cried most of that time because I was breast feeding and every time I held her she wanted to feed and I couldn’t; it was so upsetting. She was also on a pacemaker for 2 weeks as her heart wasn’t beating at the correct speed on its own so to give it time to heal where the patches are they kept her on a external pacemaker. I was so scared everyday as the doctor came and switched it off to see if there was any change now. I sat by her cot morning and night willing and praying to god that she will pull through, it affected me really badly and I cried all the time. I didn’t eat or sleep until one of the nurses said if you don’t eat or sleep you will get ill then they won’t let you sit with your baby. So I started to eat and sleep but the crying didn’t stop, I couldn’t help it. Then one day Tanesha looked at me and gave me her first smile; I was sooo happy that day, not a tear shed because I knew there was no brain damage and that she will be going home! After 2 weeks her pacing wires were removed and we were taken out of HDU and put on the ward. We were transferred back to our local hospital for feeding issues as she still was been fed by NG tube through her nose but after a week in our local hospital without the tube, we made it home and she is my little warrior princess who is doing very well at the moment. She has a tiny VSD and Mitral Valve regurgitation and we don’t know what the future holds or if she will need more surgery but we live 1 day at a time and hope it’s far off. I would give anything I had to the surgeon and staff that took care of her without them she wouldn’t be here so I thank them all from the bottom of my heart xxx

Update 28/02/2010 Tanesha’s scan went well; they took off all meds to see how she goes; her blood pressure a little high for her but they want to see her again in 2 months and see how it is then her valves still leaky but not as much as before.

Update 27/5/10 Mitral Valve still leaking and a small VSD but no worse than before so see him again in November in 6 months

Update 20/08/10 Tanesha started making grunting noises while moving around so I checked her sats on my pulseoximeter and her o2 was 98 and heart rate was 79 so I took her to A&E by ambulance. They observed her at my local hospital then transferred us to LGI where she was given ECG’s, an x-ray and an echo it was then confirmed that she was in complete heart block and needed a permanent pacemaker. She had her surgery on Wednesday 23 August 10 and all went well she stayed in ICU over night then back on HDU the next morning.
Her recovery was brilliant and we were able to go home on Friday and she is going from strength to strength and the pain seems to be easing too. So thank you again ward 10 and Dr Waressena for making her life better.

Written by Amanda Bell, mummy to Tanesha Mae Ives 31/05/09 Complete AVSD